The TRISOMY21-CLUSTER 

The cluster (https://www.ebra.eu/trisomy21/) was funded by EBRA in 2020 as a two-year networking action to enhance the coordination of TRISOMY21 research in Europe. Its primary objective is to establish a collaborative framework for the coordinated actions of Down syndrome research in Europe. Through EBRA cluster, we wish to expand existing European networks to promote coordination and collaboration among European scientists and share common projects with the goal of understanding disorders of the developing brain leading to intellectual disabilities such as DS.

TRISOMY21-CLUSTER EVENTS

A series of four events will be run 2020-2022: 

  • November 2020: Consensus workshop with leadership and key stakeholders
  • March 2021 Thematic Workgroup on Down syndrome research priorities 
  • March 2021 Thematic Workgroup on strategy to link with policy makers and other relevant stakeholders 
  • 2022 Public Forum of the EBRA Trisomy 21 cluster.


 

CONSENSUS MEETING OF THE TRISOMY21-CLUSTER

Aim 

The objective is to bring together the members from TRISOMY21-cluster with stakeholders, and patient associations to address challenges of research funding, knowledge of existing infrastructures, access to biosamples of Down syndrome patients, clinical trial networks, patient registries, liaison with industry partners and patient representatives.


 

 Agenda 

The meeting will take place on 12 November 2020 from 10:00h - 13:00h. We will start with short introductions to the European Brain Research Area (EBRA), the Horizon 2020 project supporting TRISOMY21-CLUSTER, and an overview of the main priorities of TRISOMY21-cluster. 

10:00    Welcome (Mara Dierssen)

10:05    Introduction to EBRA (Monica Di Luca)

10:10    Introduction to TRISOMY21-cluster (Marie Claude Potier/Mara Dierssen)

10:15    Q&A about TRISOMY21-cluster 

10:20    Tour the table

10:40    Results of the TRISOMY-21 EBRA cluster survey (Mara Dierssen)

10:50    Priorities and opportunities for TRISOMY21 research in Europe

             - Marzia Perluigi/Eugenio Barone: Thematic Workgroup on Down syndrome research priorities (5 min)
             - Andre Strydom/Jean Delabar: Thematic Workgroup on strategy to link with policy makers and other relevant stakeholders (5 min)
             - Q&A

11:10   Short break 

11:15   Views of the European Down syndrome Association (Pat Clarke/James Larkin)

11:25   Views of Funding agencies (5 min each) and Q&A 

              - Monica Ensini, DG Research & Innovation at European Commission
              - Philippe Amouyel,  EU Joint Programme – Neurodegenerative Disease Research (JPND)
              - Marlies Dorlöchter, ERANET-NEURON
              - Catherine Lemmonier, Jérôme Lejeune Foundation
              - Georgina MacKenzie, Wellcome trust
              - Amy Halls, National Institute for Health Research (NIHR, UK)
              - Magda Chlebus, Innovative Medicines Initiative (IMI) 
              - Laurent Meijer, PERHA Pharmaceuticals
              - Richard Oakley, Alzheimer's Society
              - Hanna Churchill, Alzheimer's Society

12:05   TRISOMY21 stakeholder discussion 
            Discussants:  Andre Strydom, Jean Maurice Delabar, Marzia Perluigi, Eugenio Barone

12:35   Refining and discussion about the working plan for proposed priorities and consensus building 

12:50   Conclusion and next steps

13:00   END

 

  Confirmed Speakers

  • Monica Di Luca
    President European Brain Council

  • TRISOMY-21 Cluster

  • Mara Dierssen (Center for Genomic Regulation, Barcelona)
    Chair of the TRISOMY21-cluster

  • Marie Claude Potier (Institut du Cerveau et de la Moelle, Paris)
    Co-Chair of the TRISOMY21-cluster

  • Andre Strydom (King's College London)
    Chair of the Thematic Workgroup on strategy to link with policy makers and other relevant stakeholders

  • Jean Maurice Delabar (Institut du Cerveau et de la Moelle, Paris)
    Co-Chair of the Thematic Workgroup on strategy to link with policy makers and other relevant stakeholders

  • Marzia Perluigi (University “La Sapienza”, Roma)
    Chair of the Thematic Workgroup on Down syndrome research priorities 

  • Eugenio Barone (University "La Sapienza", Roma)

  • Elizabeth Fisher (University College London, UK)
    Co-Chair of the Thematic Workgroup on Down syndrome research priorities 

   Stakeholders

  • EBRA officers

    Kristien Aarts
    Project manager EBRA

    Latifah Irakiza
    Office manager EBRA

    Fréderic Destrebecq
    Executive director EBRA

  • Philippe Amouyel
    EU Joint Programme – Neurodegenerative Disease Research (JPND)

  • Pat Clarke
    Chair European Down syndrome Association

  • Marlies Dorlöchter
    ERANET-NEURON

  • Monica Ensini
    DG Research & Innovation at European Commission

  • Catherine Lemmonier
    Jérôme Lejeune Foundation 

  • Georgina MacKenzie
    Wellcome trust 

  • James Larkin
    Innovative Medicines Initiative (IMI)

  • Magda Chlebus
    Executive Director, Science Policy and Regulatory (EFPIA and IMI)

  • Bettina Ryll
    Innovative Medicines Initiative (IMI)

  • Amy Halls 
    National Institute for Health Research (NIHR, UK)

  • Richard Oakley
    Alzheimer's Society

  • Laurent Meijer
    PERHA Pharmaceuticals

  • Hanna Churchill
    Alzheimer's Society


 

Join the meeting


Zoom access here 

CONTACT US



Bco Congresos
Technical Secretariat
  +34 938 823 878
  ebra2020@bcocongresos.com